I had been forewarned about her. My coworker had tried to visit and Alice had yelled "You need an appointment! You can't just show up here unannounced." When asked when she might have an opening, Alice said, "Maybe next week." Hearing this story made me realize I was going to like this woman and I would have to find my way in.
When my turn came, I knocked softly and stayed at the threshold. She was sitting in her chair, with her hair well coiffed, a smart outfit on and looking very much like a woman from another time. She asked what I wanted. I held up the flowers in my hands and nodded to her. She was immediately suspicious and said "They aren't for me." I explained that they were for her, if she liked them. I waited. I am ashamed to say that at this point I was feeling not unlike I would have had I been approaching an unpredictable animal. I waited until I felt a slow moving current between us. I brought them in and put them on the first horizontal surface I found, the edge of her dresser. I smiled and backed out of the room.
I read up about her. Her whole life she had lived with sister. Her sister had died 6 months earlier, necessitating the move to the nursing home. She was not used to her home having a revolving door of unannounced visitors.
The next week I brought three slender pink-red tulips from my garden. Their simple beauty made her pause. She pointed at her tray table and said, "You can bring those right over here." Then we got to talking about her garden. I asked 2 or 3 more questions and she said, "You ask too many questions!" and started banging her walker. Out I went.
During my next visit, I could see that she was struggling to get out of her chair. I offered to help. She said, "I guess you could help me. I need to get to the bathroom." This little connection made me feel hopeful.
After being away for a weekend, I went to see her and at 10 am she was still in bed. Her hair was disheveled and she looked uncomfortable. I pulled up a chair and asked what I could do. She reached for my hand and said, "Pull me up." I quickly realized she didn't want to be pulled up but she wanted to pull herself up by grabbing on to me. So she pulled herself into a better position. I asked if I could brush her hair. She nodded. As a doula there is often a moment like this where all of a sudden you are brought inside someone's bubble. And there is a trust and a sense of gratitude and relief that is palapable. I looked around and noticed all of her personal care products where well out of her reach. Noxzema for the inside of her nose, moisturizer for her face, her one barrette. I washed her face and hands with a warm washcloth. She taught me her daily routine. At the end I asked her how she felt. She closed her eyes and said, "Like I've died and gone to heaven."
From now on I would visit every morning and repeat these tasks. I would sit with her while her breathing became erratic. I would put cool wash cloths on her feverish forehead and hold her hand when she wanted it.
One day I went in and her bed was empty. I never get used to this feeling of abrupt and total disorientation. It is part of my job at the facility to think about these moments. All the moments of death that impact everyone. Staff continually says they feel these moments acutely. How do we as an institution communicate death?
Every resident I work with teaches me something. Alice taught me to respect threshold of someone's room as if it is the door to their house. But more importantly she taught me to not enter someone's room with a task to do. So often in health care we enter people's room with a job to do with little regard for the person involved. It sounds trite. But so many of their experiences are extractive. Everyone is coming in to DO something. As a doula we have the luxury of coming in to see what the resident wants to DO.
I've always been deeply comforted when someone tells me to "take my time." It has the effect of opening up a space for me where I thought none existed. It gives me permission to respond to the anxious messages bouncing around inside me and slow down.
When c-19 first appeared on my radar it was a spec on the horizon. One that didn't demand a lot of attention. I remember talking to a nurse friend of mine and saying, "it is basically like the flu. What's the big deal?" She set me straight and explained the importance of 'flattening the curve'. It wasn't two days later that a friend was saying the exact same thing to me. But this time I was the one doing the educating about flattening the curve. This is how c-19 showed up, in my head as something that demanded me to set the story straight with everyone who would listen. My mantra back then was, "you won't recognize your life in 5 days."
But it wasn't until 4 am a week later when I woke up in a panic, a sweat soaked panic that c-19 entered my body-as anxiety. My mind was racing and I could see it all played out. Me alone in a hospital bed. My kids parentless. I woke up the next morning and wrote my living will, found my will and trust info, my life insurance, my passwords. wrote each boy a letter. This is how I was changed by c-19 the first time. I finally wrote a living will. As an end of life doula that might come as a surprise to you but I talk about it VERY frequently with my people so assumed I didn't really need one. c-19 motivated me to get my stuff in order.
In those early days I felt c-19 in my racing mind, and the anxiety that burned thru my body like a lit fuse. Unstopppable. Inciting panic in its wake. It stayed like this for several days. My strategy was to take long walks and awaken my senses. I would focus on the tree tops swaying in the wind. The soft sandy path along the river. The quiet forest with shafts of sunlight falling through it. I walked and walked every day until something shifted inside me. The panic gave way to... denial. I know you might have been hoping for something more positive. I once heard denial described as a cloak that we wrap around ourselves for protection until we are ready. I wasn't yet ready.
I watched a ridiculous amount of Outlander. I forgot all about c-19. I started saying things like bairn, lass and lad. The permission to allow myself to do this was not conscious. But I had learned a thing or two about grief the first time around and that knowledge lived in my subconscious. Mostly that during these times it is necessary to give yourself permission to do whatever feels right at the time. No judging, no explanation needed. To take my time.
The next thing that c-19 taught me was how to pay close attention to my body. In normal times it's messages to drink water, or go to the bathroom can go unheeded for hours. c-19 taught me to be highly attuned. At the first sign of a sore throat I gargle with salt water. When I start to feel a little fatigued and achey I immediately take my vitamins. I drink plenty of water. When I get a soggy headache I make sure to get outside for a long walk. This attention had a side effect. I started to live in my body more than my head. I was no longer anxious just practically attending to every message as it arrived.
Then I heard that John Prine was sick. And that was the tsunami that broke through the dike. I gathered candles and placed them around my darkened room. I lay on my bed and played John Prine songs over and over, epecially Summer's End. It was a portal for all the grief inside me. It felt good to cry. I was ready to feel. To feel the pain of all the medical professionals without adequate protection. The suffering of people dying alone. The anguish loved ones endure, isolated with all their love sitting in their laps. The fear I had for my own family and friends.
My focus fell across the photos of all my loved ones here and on the other side. Feeling my grief allowed me to be grateful for the whole arc of my life thus far. I am here wholly in my body. Feeling my heart softly pounding in my chest on this bed surrounded by flickering light. Knowing in the deepest way that I am not in control and have never been and never will be. And that's ok. I am here now.
Grief also lives in the body. It isn't as demanding as a sore throat but it is just as real. We can override its messages much more easily. We can stay busy. Grief is like a tiny woodland creature that we must lure out into the open with a trail of bread crumbs made of silence and vulnerability. Meditation doesn't do it for me. For me it's more like preparing a beauty bath and slowly inching in. So my message to you dear reader is: take your time. Grief is slow and lives inside you. And it's here to change you.
I drove over with my heart pounding in my chest. I still get an adrenaline rush on my way to sit vigil with someone. The prospect of being invited into one of the most intimate experiences in all of life can get my mind racing. What should I bring to the family: stress release aromatherapy for their pulse points? A flameless candle for ambiance? My favorite children's book about death Duck, Death and Tulip? Then I remembered that I don't have to bring them anything but my presence. My calm presence. I remember from going through this myself what I most needed was an emotional lighthouse. Someone to calm me just with their peaceful, steady being. I decided to work on cultivating that for the rest of the ride. I call in my spirit guides and Rob White, my husband on the other side. This exercise of reminding myself that I am not in the driver's seat, and that I have company, always calms me.
I arrived at the senior living facility with snow falling all around reflecting the quiet inside me. I found the way to his room and gently knocked on the door. His family members greeted me. I put my things down and found a chair. My mind was empty. I held no anxiety about WHAT TO DO. I just introduced myself to them and then to their father who was actively dying. They talked easily about this journey they found themselves on. They had experience with death, not exactly like this, but death in some of its other forms. sudden death and prolonged and anticipated Altzheimery death.
I learned all about their lives in a small town, their dogs, they shared photos of things and people that held space in their hearts. After a while I asked if I could read some poems to their father. They said sure.
I started with Robert Frost's "Stopping By Woods on a Snowy Evening" I set the scene for him by describing the snowy scenes in the picture book as I read. I knew he had been a big bird lover so I took time to describe each bird on the branches heavy with snow.
Later I read Mary Oliver's poems about dogs.
I would read a poem or two and then, as often happens with this work, move in the direction of some unseen current. Directed by some force of love bigger than myself. I had gathered some truth's about this man from his family that I could now employ to bring some comfort. He had been a pigeon keeper. I had him visualize standing outside his pigeon cages with his finger on the latch to release them. Had him feel the thrill that moment held and then watch as they flew out in a cloud of feathers and motion into the sky. Vanishing. Marveling at what it must have felt like to know with complete confidence where they were headed. A kind of magic.
We visualized some more. I had him imagine standing in the fields of the farm where he had always wanted to live. Had him smell the hay, feel the horse nuzzling his hand, see the corn swaying all around him, hear the chickens in the distance. I was trying to put him in his life one last time. Taking him far away from this senior living facility and hospital bed into the heart of his life, the times he felt full of joy and peace.
At one point his daughter sighed and said, "This is good for me too. I'm loving this,"
This is not the first time a caretaker has been grateful to have someone to pass the time alongside of them. Sitting at the bedside of a loved one as they endure the labor of death is exhausting, heart wrenching and mundane all at the same time. "Slipping away" is a verbal kindness for the living. It truly more akin to labor.
When I left him his daughter asked to hug me. Of course. This work I do is not fancy but the bonds I make with people in a short time feel like bumping into the essence of love. I am humbled to be allowed in. I hope I get to see the pigeon keeper again.
I have people call me from the hospital in deep distress. You can write the most thorough living will on the planet and still find yourself bedside with a scenario you were unable to conjure up just a few months before. And those scenarios are almost always really GRAY.
I think when we are thrown into the deep end we tend to rely on THE PROFESSIONALS. Take for example my roof. There are some obvious problems, like leaks and suspicious patches of peeling paint. I will have a few roofers look at it to decide what to do. If those roofers come back with "You definitely need a new roof, it's about to collapse" or "It'll do just fine for 10 more years if you do a patch job around the chimney". I can't very well wander around up there myself and figure it out. I have nothing to add because I have zero experience. I have to rely on the professionals. If they disagree I am by myself in a no man's land. Roofs aside this is exactly what happens in hospitals every single day.
People are required to make very serious decisions about medical treatments while relying on doctors that may very well be unable or unwilling to give them the information they need to make those decisions. I recently read a study where the longer you know your doctor the worse they are at being honest about your condition, instead choosing hopefulness. They are also much more optomistic about predicting how much time you have. And the ultimate tragedy, they continue prescribing treatments even though they are futile. They are unable to draw the line. Where does that leave their patients?
Take my friend whose mother at 78 was a very healthy active woman until she had a stroke that left her without the ability to speak coherently. It was clear to my friend that his mother could still think clearly but the words coming out of her mouth where out of her control. She was doing the normal rehab but then developed a very serious blood infection that if left untreated would kill her. The treatment involved a very risky surgery that she had a 50-50 chance of surviving. If she did survive she was in for a long, slow and very painful recovery. The ability to speak may come back thru a lot of rehab or it may not. What to do? This is when he called me. I asked him what he thought his mother would want. He didn't know. I asked if she was a fighter. He thought not. I asked about his father's ability to care for her long term. He said his father would do anything for her. I told him to get a palliative care consult. He did and aferwards was leaning toward not doing the surgery. They would rather bring her home and enjoy what time they had left with her. He called a day later and said his cousin was a doctor and had told them "Imagine a great foggy lake, you can't see across it. You need to put your mother in a row boat and give her the chance to row across the lake because if you don't you will never forgive yourself." And with that they decided to do the surgery.
To me, tagging "you will never forgive yourself" to anything connected to these conversations is unfair. We are all doing the best with what we have in front of us without laying these heavy trips on each other. There are plenty of surgical outcomes that one might second guess in hindsight.
Thankfully she made it through the surgery. The recovery has been long and painful and included a feeding tube for a bit. Initially she was despondent but eventually came out of it and is slowly rehabbing. Her ability to communicate hasn't come back yet.
Many of us will have to learn where to draw the line, either for ourselves or our loved ones. So how can we think about this ahead of time? Is it even possible to prepare ourselves?
In my personal life I think a lot about how temporary everything I hold dear is; life, friends, family, my health and the health of those I love. I remind myself of this as often as I can. This is a key step in preparation because I know that the moment is waiting for me at some point unless I die suddenly.
The other thing I ask people who are faced with these decisions is "What is the hardest thing about your present state of health?" My friend Elisabeth who is an oncology nurse told me about this important question. Perhaps it is being in near constant pain, or being dependent on others/a burden to loved ones, or perhaps it is being stuck in a hospital. Whatever it is, will having the procedure most likely bring you more of what is hard? And also "What brings you joy?" Will the procedure most likely bring you more or less of that? These questions don't get you out of the no man's land entirely but they give you some beacons to shoot for and some rocks to avoid.
There are some pretty on the money Palliative Care PSA's going around. One is "No holes without goals." This refers to treatment procedures that involve having a hole put in your body. Before that happens make them be clear with you about what the goal of the procedure is. If it is "more time" make sure it is the right kind of time. More time suffering is not what anyone has in mind, but unfortunately in the medical world "more time" is a goal in and of itself.
It is my hope that as we become better advocates for a quality of death, we will give doctors permission to be more honest and realistic not purveyors of false hope. Hope that leads us to make decisions that do not secure a death that is in line with the values by which we have led our lives.
I have been at this work for a couple of years and still can't seem to answer the question "What is a death doula?" succintly. Some common replies are "I am a non medical person that provides physical, emotional and spiritual support to dying people and their caregivers." Or "I am a different doula with every client I have." While both of these are true I don't think they do much to answer the "What is a death doula?" question.
I think it makes more sense to tell stories about my experience as a death doula. It's not succinct so it had better be an elevator in the Burj Khalifa in Dubai.
Frequently I get called from the hospital. I get the back story and find out why they called. Most people say something to the effect of "I don't know why I am calling I just didn't know what else to do." What they need me to be is an emotional lighthouse. Anticipatory grief can create chaos in waiting rooms. I see my role as being the calm presence showing them the way to solid ground. I remind them that they can do this and then offer them some tools.
If the person is very near death and in a sleep coma, I usually help them with ideas to change the room to a more calm and peaceful environment and offer some sort of blessing. This is a time when people appreciate having something appropriate for the moment put in their hands. I draw from many spiritual traditions and encourage them to make one of their own as well. One of my favorites comes from a book (and I'm sorry I can't remember the title-the death books are about 5 deep on my bedside table at all times). It was written by the friends of a man who was dying of AIDS:
"Thank you for the life of our dear friend. Thank you for the miracles that make him who he is. Thank you for the amazing life he has lived and for all he has been. Thank you that he will now journey to become a bright star. Help him as he sheds his earth garment and his pain and his sickness. Help him to journey freely unencumbered by these things. May the journey be blessed by the knowledge that he is loved and while he will be missed, we will always be able to see him in the stars. We put his life, being and transition into your hands the mighty god of the stars and all beings."
These prayers are helpful because when we find ourselves at the bedside of a dying loved one we can be at a loss as to what to say and do. I always encourage them to let everyone have some alone time with the person. Hearing is the last sense to leave so even though they are in a sleep coma you can still talk to them. This is helpful even in the deaths where there is conflict. I encourage people to say what is in their heart. I prep them to be able to speak their truth in a calm and measured way. It is equally important that after they have had their 5-15 minutes they need to let the person die in peace.
Sometimes people call and they are in the midst of making difficult medical decisions. Often their beloved has just had surgery and they have been given competing advice from the multiple doctors involved. One doctor says something like "There is nothing more to be done." The other says, "We can do this, that and the other thing." Understandably there is confusion. This is an instance where I can create the space for them to find their own wisdom. I ask "What matters to your beloved?" Often they say "They want to be cured." I ask if the doctors are telling them that this is possible? They say "They are really positive and hopeful. We are grateful for that." I have learned to be leery of 'postive and hopeful' in my line of work. I ask them if they trust the doctor. Frequently they say "I haven't known this doctor long enough to know." Or "There have been so many procedures I don't know who the doctor is." I venture that if they couldn't be cured what would they want? They usually say the person would rather be at home. 8 out of 10 people want to die at home.
The next step is helping them advocate for themselves so they can get the information from the doctors that they need to make these decisions. To help them get information I usually have them ask for a Care Conference or a Palliative Care consult.
At some point they enter hospice and are looking for support to make this experience their own. Topics people ask about include how the body shuts down and the kinds of things they can expect. How to manage their own anxiety around death and dying. How to balance the needs of the extended network of family and friends. Sometimes how to prepare a child for the death of a parent and how to invite them to participate in a way that feels comfortable for them.
I can do most of this work in person, over the phone/text messages. It all depends on the support system and how much experience and confidence they have around death and dying. And remember: it doesn't have to be a last minute call when you and your family are in distress. We can talk through these scenarious before the time comes so that your last moments together are calm and as close to what your beloved wanted as possible.
Are we on the 163rd floor yet?
My eldest son just asked me if Rob, his dad has a grave. Rob died more than 5 years ago. THAT is grief operating on its own time line. He wasn't ready to ask that until just now. We are these crazy packages of skin and bones and muscle and memory and feelings and spirit and we can get awfully tangled up. Integrating all of it is a full time job as far as I can tell. And it doesn't make it any easier that we can walk around and function seemingly well even though we are leaving most of our emotional selves pinned under the biggest of boulders. For YEARS! We can live our entire lives emotionally hamstrung by our childhoods. Add to that the grief events that await us at nearly every turn.
My remedy is to try to open myself to whatever feelings come up and then find a solution that makes me feel better. It doesn't have to make sense on a rational level, in fact I usually like the solutions that don't make sense rationally.
Take for example my task for tonight. I unearthed Rob's beloved Birkenstock sandals today. They were in a pile of shoes at the bottom of a plastic tote in the basement. He wore them for many. many years and they are molded to his feet. What to do with them? I'm exhausted so I just put them in the garbage. I fell into bed but I hated that they were in the garbage. If FELT bad. So I got up and took them out and put them on the counter and climbed back into bed. I let my feelings speak to me. They said I should bury them in the backyard next to my vegetable garden. It seems right that they should keep me company when I am gardening. They should be near me but kept safe from use by anybody else and free from desecration by sitting in a landfill. This makes me feel better. Its healing for me. Grief will speak to you but you have to be willing to listen, maybe willing to do something nutty. But it will be your path to weaving your feelings and your spirit and your mind and body back together.
I think of Rob's grave as the sunny, sandy bottom of Round Lake where we dispersed some of his ashes. To Caleb that didn't seem right. I asked him what was important for him. He said, "Reece and I and our kids will need a place to visit him." This makes me cry. I ask him where that might be, what feels right to him? After some thought he said, "I don't know but I want it to say his name and his birth and death date somewhere." So we will be doing some research on green cemeteries.
"Of course I wake up finally thinking, how wonderful to be who I am, made out of earth and water, my own thoughts, my own fingerprints- all that glorious temporary stuff."Read Now
This little ditty comes from Mary Oliver who has now joined the spirit world. I am sure there was quite a kerfluffle to welcome her. The idea that upon waking we would remind ourselves how glorious and temporary our existence is- would put us on the path to a better life and a better death.
'In my work I frequently bump up against the phrases of "fighting it" or "giving up". It's as if we are all masters of the universe whose death is never acceptable. It's another example of end of life discussions where we are given choices as if it is one or the other. This kind of thinking offers a false dichotomy.
As we are facing death we have another choice. Acceptance. It is not the same as giving up. It is choosing to live in the moment with the truth and preparing for death. This will not hasten it. It gives us time to think about our legacy and heal the relationships that need to be mended. This is the oppostie of giving up it is choosing to live fully in the moment. We are all on death row. We are all living up until the moment we die. No one is giving up on their life but I would contend that they are choosing to craft an end to it.
If you are reading this with a loved one who is facing their own mortality: I'm so sorry.
Whatever the circumstances it is a hard, heart rending time.
Here is some basic information to help you feel more calm, confident and in the present.
First and foremost it is important to take care of yourself. You must apply your own air mask before helping others- said every airline ever. My top three tips are:
1) Drink water. All the time. B vitamins wouldn't hurt either.
2) Get outside everyday preferably multiple times. There is something about being under the sky that can right our ships in the stormiest of weather. If your mind is racing focus on your senses one at a time and name five things that sense picks up.
For example, name 5 things that you see, (then five things that you smell and so forth). It is an exercise in getting you back into your body.
Finish by standing still and taking some deep breaths with slow exhales. 4,5,7 comes to mind. Breathe in for 4, hold it for 5 and release it slowly for 7,
3) Eat good food. Not 'fakey good' which is food that tastes good but isn't actually nourishing, but good good. You would be surprised at how easy it is to forget.
For your person who is dying
1) Allow them to talk about what is happening to them. In their bodies and their minds. Listening is the most healing thing you can do for them. You might start the conversation with, "What do you want to do with the time you have left?" or "Is there anything that is weighing on you right now?" "Is there anything you want to talk about?" As they are sharing try not to offer advice or fix anything unless it is very, very clear that is what they are asking of you. I find it helpful to say "Tell me more about that." Allow time for silence. It is in the silence that the most work is being done. If you fill it with banter the opportunity is lost. You are holding space for them to do their work.
2) No matter where they are make the space around them sacred. Clear the room of clutter. Soften the light, Add music or candles if that is wanted. I love the smell of beeswax melting, but maybe for your person it is lavender, or chocolate chip cookies baking, or their favorite pot roast. Whatever is comforting to them.
3) A big part of making the space sacred is controlling what happens there. If you compare it to a woman in labor you will get the idea. You wouldn't sit and talk shop in the labor room. The same courtesy should be extended to the dying person. This is hard work and they do not need to be pulled away from it by unnecessary distractions. A birth doula once explained it to me this way. A woman in labor is like being in the middle of this river. The doula's job is to keep the woman there so she can do her work. The doula controls what the atmosphere in the room is like per the previously given instructions from the woman herself. The doula alerts her to who is coming and going so there are no jarring surprises. It's much the same with death. The dying person needs to be able to recede from this world in their own way and not be called back by sounds and lights that could be startling.
4) Some of the work of dying can be difficult to witness. There can be an uncomfortableness about it that cannot be totally mitigated. It is important as the caregiver to stay calm, do what you need to do to take care of yourself. It is also important to keep hospice up to date about any and all symptom changes. Pain is much more difficult to control when you are behind it. There are medications for anxiety and agitation. Hospice can only be there 5% of the time but they are always only a phone call away. Unfortunately during such an intense experience it can be easy to forget to call. I've been there.
5) Hire a doula. At least have a conversation with one. I know how hard it is to involve one more person into the mix, but believe me you owe it to yourself to at least have a conversation with one. I can virtually guarantee that it will make you feel better. Less alone. Less stressed. Less at a loss as to what the next step is.
He was sitting on the edge of his bed. He was so thin I had a hard time believing that he had the strength to sit. His cheekbones jutted out, he had long hair that hung in loose strands around his face. His eyes were piercing when he had the strength to open them. I introduced myself and asked if he was up for a visit. He looked at me with these intense eyes and said, "What exactly would that entail?" I immediately liked him. I explained why I was a hospice volunteer (because my husband had died in this hospice in 2013 and I had a soft spot in my heart for it) and wanted to know if there was anything he had on his mind that he wanted to talk about. Just then the nurse came in to retrieve his lunch menu card. He hadn't filled it out yet. The nurse seemed surprised and said something to the effect of "Let's go". Matt who was pretty heavily medicated and weak took the piece of paper and a pen in hand very slowly and said to himself, "Come on Matt, suck it up!" He said it a few times. I offered to be his scribe and he roared "I don't need you to do that!!" He also mumbled repeatedly "Be patient with me." I did nothing but listen and listen really hard because he spoke very softly and it was clear there would be no repeating anything. Sometimes there were full minutes between his sentences. He finished his menu and we talked for about ten minutes. I ventured that it was curious that the nurse had been in such a hurry but had not come back to get it. I said this in a laughing way and he laughed too. He went on to say how everyone was incompetent. And we laughed and he complained about everything. I could feel love pouring thru me for him. He was erascible and witty and lovable. I don't mean that in a patronizing way. I mean it in a way where I was connecting with him on a human to human level despite our different circumstances. We talked about his high school and recurrent dreams that he had been having. I ventured that he must have been his own boss. He was surprised at that and said "I have always been my own boss." I laughed and said I couldn't imagine him being anyone's subordinate. He went on to tell me that both his parents had died by the time he was 17. He had spent an entire life time fending for himself. I wondered aloud how it must be hard to be taken care of now.
Finally his food came. He had a very hard time swallowing his first bite. This is common in hospice. The day where you can no longer eat food. You don't have the saliva and the swallowing ability to get the job done. I gently offered that he could have a smoothie instead. He looked up at me thru his hair and said, "And that's supposed to make me feel better?" More bittersweet laughter. He slowly lifted his plate and motioned that I should take it and put it in the far corner of the room. I said, "Are we banishing the food?" He said "Yes". He went on to pick up other things and I could tell whether they needed to be banished or put away. Most of the time. I got into some trouble with the salt and pepper. They had a special spot on a chair. Eventually he started falling asleep. I said I would go visit other patients and come say goodbye before my shift ended. He said, "No,no, no its ok." and then fell asleep. I went and did my rounds and came back towards the end of my shift. He was sitting on the edge of his bed with his hands folded on his table. He said, "I don't know when you work again but I have a feeling this is going to be the last time I see you." I said, "I think you are right." He crossed himself and knocked wood. After some silence he said, "I'm so pissed. I'm so pissed. I'm so angry." I asked if this was a new feeling. He said that it had started a few days before. It coincided with when he arrived at hospice. I asked if it was ok that he was angry or did he wish that he wasn't? After some silence he said, "I wish I wasn't." I said, "I'm so sorry but I understand why you are." He lifted his head and looked straight at me and said, "YOU understand nothing." And it felt like a giant, heavy and permanent garage door slammed shut between us. And he was right. The audacity of a living person saying that they know what dying is like is monumental. And isolating. He waved me off. I asked if we could shake hands. He said no (because he was OCD and not crazy about germs) but offered a fist bump instead. I felt horrible. Jangly. I left and the stafff were treating me like I had done such a good job at getting him to laugh and interact, but I felt a big heavy lump inside that I couldn't outrun. I debated whether I should disturb him again but felt like I had to. So I popped my head in and said, "Matt?" He looked up and I said, "I'm sorry." He nodded and waved me off again.
I will never ever again say "I understand" to someone in a situation that I can't understand, As an end of life doula I frequently feel like I am walking across a field full of landmines. And sometimes the only way to know what they look like is to step on them. That is one I will never step on again. Thank you Matt. It was a pleasure to know you.
This quote comes from Joe Primo who specializes in education about children's grief. I've often wondered what grief's work is. Does grief have a purpose? I am in several online grief groups and once posted, "How do you nurture your grief?" I was shocked that over 50% of the respondents said, "I can't because ...." They felt that work or having children, or their fear that they would be overwhelmed by it was a reason that they couldn't take the time to grieve. This notion that grief is somehow optional or can be mitigated is interesting to me. Obviously it is deeply personal but the idea that people are consciously avoiding it is what intrigues me. Is there a price to pay for this? and if so what is it?
I think it is very normal to keep your grief at bay during the illness when you are the caretaker. I remember meeting a friend who had come from out of town. I think she was amazed at how I was managing. I had two kids and a household to manage and I was taking care of my dying 50 year old husband. This is the norm for every single one of us soon to be widows. My friend was asking probing questions one after another. I finally said "Are you trying to crack me open?" She said, "Yes I am worried that you are in some sort of denial." I told her that I had to be and I couldn't afford to crack open just yet. To do what you have to do day after day you have to get up every morning and put on a suit of armor. You are doing the work of holding it all together for everyone. I think that there are a lot of people out there who are stronger than is good for them. They can push themselves farther than they should. When their loved one dies it is the time to take off the armor and be vulnerable and fall apart. But sometimes they have been doing it for so long that they just carry on.
I took my own grief very seriously. I refer to it as my own personal grief camp. I would go to yoga, come home and watch memorial videos, or read old love letters from Rob or sympathy cards, or look at photos anything that was guaranteed to make me cry. Then I would cry for as long as I felt like it. This was not a pleasant experience. The crying one does while grieving feels like you are being turned inside out. It is violent and gut wrenching and exhausting. Because of this, the rest of the day I would follow the path of least resistance. I would avoid going out at all costs. No grocery stores, no restaurants, no loud places, no bright lights. No chance to come across some random stranger who would ask how Rob was. We ordered out a lot. I stayed home and went to my best friend's house, that was it. For a whole year.
But what if I had denied my grief? What if I had held it at arms length? What if I had kept busy instead? Would I have had to pay a price down the line? I often wonder this. I have many friends who are widows. There are a fair number of them that say they can't cry. That they never cried. They describe it like a lead apron separating their head from their bodies. Emotions can not penetrate it. Even if they wanted it to. I believe that the emotions are stored in our bodies. Grief lives in our bodies. I think when you love someone you have all these links inside of you that connect to them. Grief is the breaking or transformation of these links from the physical world to memory and spiritual connections instead. When Rob died I felt like he had been ripped out of my side. The image I had of myself was of someone who had been cleaved in half. Those links inside us to the people we love are made of all the ways your life is intertwined with that other person. For me it started with opening my ears in the morning. I used to lie in bed while Rob got dressed, he had to leave an hour before I did. I would lie there in my cozy warm bed surrounded by the dark outside the windows. I could hear him going thru the closet and the hangers sliding along the metal bar as he selected his shirt. Then it was the sounds in the bathroom as he brushed his teeth and shaved. Later I could hear the muffled coffee grinder. He used to wrap the grinder in a towel and go to the basement so it wouldn't wake me up. And finally the door closing as he left for school. Waking up to a quiet house is a grief event because the silence is so lonesome. There are other links made of how we co parented together, how he took care of me. How he labored to make the perfect cup of coffee for me. How he was the only one who knew how to rub my head when I had a migraine. All the million things that the person did for you. Grief is the breaking of those links. I believe this is how we forge a new identity.
What happens if you don't do this work?
One man wrote in on the message board in response to the question of how he nurtures his grief. He said, "I denied my grief for 27 years and it wrecked two marriages. Please please don't make this same mistake." I think part of the price we pay is that we can't really love another person, because that space is occupied by connections to ghosts. I think it also may be an inability to be vulnerable again. It is a whole different experience falling in love after the death of a spouse. For me it felt like standing on the edge of a big abyss and really feeling that it was a choice if I wanted to jump in. I could see so clearly that I was setting myself up for the same devastating heart break. There was something attractive in shying away from that kind of vulnerability. But ultimately I believe we are here to love. To take risks in love. Grief is the process by which we renew ourselves. I think this Emily Dickinson's poem speaks to this.
Something's odd-- within-- That person that I was--And this One--do not feel the same--Could it be Madness--this? To gain distance from that person--and avoid losing my mind--I had to let my old self recede into the past. I had to make a new, healing self that would stumble into the future.
I believe this is grief's work.